The National Institutes of Health (NIH) is pumping more than $30 million over the next five years into the study of a rare brain disease. It causes unusual behavior in patients as their frontal lobes shrink.

The disease, called frontotemporal dementia (FTD), is actually a range of disorders that include memory loss and behavior problems. Only 50,000 to 60,000 Americans are known to have FTD.

Behavioral variant, or bvFTD, is the most common form. It causes a person to act inappropriately in social situations. The patient may say inappropriate things, behave in a sexually aggressive way, lose interest in personal hygiene, or overindulge in food, alcohol, or tobacco.

One of the biggest problems is that FTD is difficult to diagnose. Many family members and caregivers confuse the symptoms with those of depression, or simply having a bad attitude, particularly at the onset.

Three of the NIH grants are for about $6 million each and will be used to help scientists focus on better diagnosis and treatment of the disease. Researchers will look at genetic mutations for both inherited FTD and inherited ALS, or Lou Gehrig’s disease. A fourth grant includes money earmarked for the study of all rare diseases.

Unlike dementia caused by Alzheimer’s disease or other disorders, FTD can strike someone as young as 20. Onset usually occurs when a person is in their 50s or 60s. Most people live between six and eight years after diagnosis, although death can occur within two years or as long as 20 years after diagnosis.

Sometimes FTD comes with aphasia, which is the inability to understand language and, eventually, to communicate at all. Many people with FTD become unable to care for themselves and require 24-hour care in a facility.

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Caregivers Report Physical, Emotional Challenges

Living with someone who has FTD can be as puzzling as it is overwhelming. Rona Klein’s husband Ken was diagnosed with FTD in January 2012, only after totaling a vehicle.

She heads a support group in Winston-Salem, North Carolina. Ken is in a clinical trial. (A listing of clinical trials for people with FTD can be found here.)

“At first we thought he was just hard of hearing, so we got him a hearing aid,” Rona Klein said. “Then we thought maybe he was depressed because work started slowing down, so he went on an antidepressant.”

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At one point Ken, a former rifle instructor, shot a hole through the living room floor, Klein said.

People with FTD can exhibit emotions ranging from violence to apathy. Elizabeth Finger, a researcher at the University of Western Ontario in Canada, is studying whether oxytocin, a hormone known to promote nurturing, could alleviate some of the cold, offensive behavior that people with FTD sometimes show.

Rona told Healthline that her husband’s behavior had become so difficult for her that she’d planned to divorce him by the time of his diagnosis. He would ask the same questions over and over and over. He didn’t want to do much of anything.

There are numerous support groups online and over the phone for both patients and caregivers with FTD. Because FTD is relatively rare, not every community has an in-person group. There’s also help available for children and teens affected by FTD.

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An Uncertain Diagnosis, and No Cure

Because a diagnosis can be difficult to make, symptoms are often mistaken for Alzheimer’s. Doctors sometimes prescribe medications such as Aricept and Namenda. These drugs can be effective for patients with Alzheimer’s, but can actually worsen symptoms in people with FTD.

Many times people with FTD are co-diagnosed with Parkinson’s, another degenerative brain disease.

There is no cure for FTD. Current medications used to treat it were designed for other diseases and only address the symptoms. However, a new phase II study was announced at the 9th International Conference on Frontotemporal Dementias in Canada in late October.

FORUM Pharmaceuticals is testing FRM-0334. In the FORUM phase 1 trials, 70 patients received FRM-0334 and scientists saw that the treatment was well tolerated.

The experimental drug is intended to boost progranulin. Progranulin is one of the proteins people with FTD lack. Researchers learned in 2006 that mutations in the granulin gene sometimes cause FTD. This also can lead to abnormal amounts of TAR DNA binding protein-43, or TDP-43, which has been found in about half of FTD patients.

The rest have abnormal amounts of a protein called Tau or fused in sarcoma (FUS).

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All people with ALS have TDP-43, and some Alzheimer’s patients have excess Tau. So there are many patients who could benefit from research on these proteins. The Association for Frontotemporal Degeneration (AFTD) is collaborating with the ALS Association to move the field forward.

Susan Dickinson, executive director of AFTD, said awareness of the disease is gaining momentum. “A lot of it has to do with the advocacy we’ve been doing with families and patients who are willing to speak up,” she said.

Several years ago, for example, the Social Security Administration decided to fast-track benefits for people with FTD. Programs also are springing up in which families can donate the brains of their loved ones with FTD to science after their deaths.

“The science is tremendously exciting,” Dickinson said, adding that a lot of the buzz around FTD is centering on the recent discovery of a gene known as C9. The gene is also present in other neurological diseases. But she conceded that the unknowns are enormous and that much work remains to be done.

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